My advocacy helps others truly see my special needs daughter

Why I highlight it when school personnel get things right in handling Angelman

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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I wasn’t surprised or outraged when I read the news article “‘They matter too’ Las Vegas mom upset over special needs son’s exclusion in yearbook,” by Joshua Peguero. Instead, I felt fueled and encouraged. It was a wake-up call to continue writing about Angelman syndrome (AS) and advocating for my 13-year-old Angel, Juliana.

Peguero’s article stated that the school has since explained the oversight, which left out all the school’s students with special needs, as “human error”; it also apologized and offered the mother who complained a refund of the yearbook cost. But the mother of Samir Azarpira doesn’t want a refund. Instead, she wants what any special needs parent wants — for her child to be seen and acknowledged.

My heart goes out to that mother because I know what it’s like when strangers don’t see Juliana for the smart, lovable kiddo she is. No parent wants to be in the middle of a scenario like this one.

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The story brings attention to a problem that’s hard to face and resolve. But it also made me think about how easy it is to call out mistakes involving special needs students. I like my approach better, which is to highlight the teachers and administrators who get it right.

Just last week, for example, I wrote about our smooth transition into middle school, thanks to the expertise of our support service administrator and Juliana’s teacher and support staff. I’m still waiting for that column to trend. I say that tongue in cheek because I know it won’t happen. Yes, people should be held accountable for mistakes, but I see a bigger opportunity here.

Not the first time

When I looked for more details about the Azarpira article, I needed a few minutes to find it. When I Googled “special needs student left out of yearbook,” I found several articles in different states, from as far back as 2001. I was a little shocked by this discovery: This type of yearbook exclusion isn’t new at all. So if it’s not new, why is it still happening? What will it take for omissions like these to stop occurring?

I wish it were as simple as a trending news story, but news cycles come and go. Obviously, calling attention to these problems isn’t changing the problem. How can we help others see our special needs children for who they are?

I believe the answer is the slow burn of being a parent advocate. We’ll have to continuously stand up with actions like writing, telling, and showing. This sort of advocacy doesn’t bring about change overnight; it takes time and constant awareness.

Each one, reach one

I’ve been educating people about AS on my own terms for the past 10 years. When I write about Juliana or Angelman syndrome, I’m saying, “Hey, see my daughter and what she can do. Know that she is beautiful in spite of living with a rare disorder.” We have a lot of people in Juliana’s life who see her that way.

She’s been taught and loved by two people who were recognized as Teacher of the Year. Wonderful therapists support her and help her build her skills. Her school administrators see her and her classmates’ uniqueness, as evidenced in their yearbook last year. But even with all of these great examples, I still feel the need to write about AS and advocate for my daughter, so that I reach those outside of our positive circle of influence.

This heartbreaking story is actually not about a yearbook at all. It’s about a mom coming to terms with people who don’t see her son for the unique person she knows him to be. Instead of offering her a refund, perhaps someone from the school will say, “Yes, we know Samir. He’s awesome! We see him.”

I’m grateful for the amazing people who come into Juliana’s life and see her in a special way. But a lot of strangers don’t know her or understand Angelman syndrome. I won’t reach everyone, and that’s not my goal. If I write and change just one mind about AS, it means I’ve reached one person who will see my daughter. And where there’s one, more will surely follow.

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.


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